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Sunday, October 16, 2016

The True Story of 40mg Dex Steroids!

Hello 10.16.16


Finally…the crash fog is lifting. I can breathe again. I can feel some relief. I don’t ache as much. I can feel hope again. I’m finally (somewhat) ok in my own skin. I have “perspective” again. The frustration, anger, sadness and overwhelming sense of defeat is disappearing. It’s been 5 bi-polar crazy making days of steroid up up up and down down down.

These mysterious, cancer gobbling Dexamethasone Steroids make me feel so temporarily, momentarily wonderful, “high”, “buzzed” and “well”. There’s an amazing physiological and psychological energizing rush and boost that happens, with an amazing sense of being ok, being well, being who I used to be, being capable of “anything” again. Steroids give me pretend super powers.

Then it happens… the crash fog rolls in. The unbearable, awful, stifling, suffocating crash creeps in, engulfing my entire being, strangling me in an undefinable yuckiness. It’s not instantaneous. It creeps in rather slowly, hour by hour, dragging me further down the tunnel of misery, ripping away the surreal “helium high”. It rolls in throughout my body, permeating my being, physically, psychologically, dragging me into a pit of gloom and misery for days.


Tuesday, (6 days ago), I slammed back 40mg of Dexamethasone steroids with a Vanilla Ensure. That’s 10 little 4mg pills. They look so benign and insignificant. 10 little mint green pills that will get in my body and start telling myeloma to skedaddle the hello out of my body. 10 little miraculous pills that do so much good, yet eventually wreak havoc with me. 10 x 4 = 40. That’s “high dose” in the myeloma world. Haven’t done that since January 2010, and I don’t know how long I will be doing this level. To infinity? For 3 weeks, it’s 20mg + 20mg on Kyprolis infusion days. For one week, 40mg at one pop, on my Kyprolis off week… which used to be my “break week”. No more breaks. No more “break week”. Continuous, continual treatment… forward march to infinity. 


I take these lovely little mint green pills when I wake up. Some wake up extra early to get a jump start on the crazy-making side effects, so sleep won’t be entirely elusive later on. Me, after almost 7 years now, I’ve learned to not change my life too much to accommodate myeloma. “F you myeloma”, I say to myself as I swallow those 10 little pills. “F you cancer”. So whenever I wake up and get my day started, I take those 10 little magical monsters. As I swallow them, I know all too well what’s to come in the next several hours and days. I know the crazy bi polar extremities awaiting me. But I do what I have to do, to survive.


Several hours later I begin to feel a wonderful sense of “everything’s going to be ok”! My body doesn’t ache as much, my spirits are lifted, I’m feeling more energized, happy and hungry! I feel hope.

Several more hours later, the euphoria increases. I want to “do something”, accomplish something, get somewhere, do all the things myeloma, chemo, side effects and fatigue have prevented me from doing. I’m hungrier. Roar! I feel light and full of life. I breathe deep and almost forget I have cancer. I’m beginning to feel “alive”.

Thank you for the awesome picture Dr Dianne!
Several more hours later, I’m bouncing off the walls. Roar! Most everything is funny. Life is going to be ok. I’m going to be ok. I want to scream to the world, that I’ll be ok, Julie is coming back! Let’s party! Let’s do something. Let’s go somewhere. Help me make up for lost time! Play with me, laugh with me, fly with me, run with me, scream with me. Maybe I don’t have to take disability retirement after all I ponder.

Here I am, lower right corner lol, DexaMETH lab ;)



Several more hours later I want to eat the entire grocery store or restaurant menu. I want to do even more things: play, laugh, clean, straighten up, do chores, work, organize, drive, ride, walk, run, play, laugh, scream, write stories, tell stories, plan events, go into my office, help students, help people, save the world, eat good food and not so good food. I want to do everything. I dream of riding my horses, going on trips, hiking, riding, lake sports, skiing, running in nature, yelling to the world, “I’ll be fine!” “I’m winning”! I feel like I can accomplish anything. My power is back. Julie is back, world! Watch out, get on my bus, or get out of the way! Everyone and everything is funny, joyous, happy, accomplishable. I talk louder and don’t care. It feels great to feel so alive! 

Several more hours later I know I have to wind down to eventually sleep. But eh, who cares. I don’t want this euphoria and bliss to end. I want to accomplish, laugh, play, enjoy life while I can. I love feeling somewhat ok. It’s unbelievable to me. I want to dance, run, scream, skip, hike, do things! And I want to eat everything in sight. Sometimes I do, sometimes I control myself. Mint green ice cream matches the theme of those sweet little mint green killer steroid pills. I love having energy. I want to be me again. I temper myself and control my cravings. Mind over matter. It’s late at night. The moon is shimmering through my window. I feel so alive, I feel so me again.


I submit and give in. I drink chamomile tea. I take Melatonin or Benadryl. I try to find funny things to watch on TV, or read or just peruse online. I’m energized and positive. I’m often up late enough to hear the hoot owls hooting. The moon, the owls, the night birds. I feel so alive! I’ve learned to love the late nights, new mornings. It’s so peaceful to me. Everyone and everything is calm, resting, relaxing… while my mind is spinning out of control, in a good way. I force myself to bed, regretful that I’ll “waste” my buzz on restless sleep. 

Morning brings exhaustion, but I still feel ok. I know the crash is looming, but I’m still somewhat ok. My face is flushed and my body is buzzing and I have a headache. I hydrate a lot, or try to. I control my eating. I plan all kinds of things in my head, but I know my helium will soon be dissipating. The mental restlessness begins. I’m edgy, ready to pounce. 

24 hours after 40mg of steroids I think I can still do all kinds of things. But as the hours pass and the day moves forward, my illness reality begins to return. Whomever I’ve said I might be able to meet up with, I cancel. Whatever project I thought I could accomplish, becomes a labored chore. I push forward. I force myself to be ok. I force myself to do things around my house and property. I feel worse each hour. I'm waning and I know it. I’m frustrated and resentful.


36 hours after 40mg of steroids, my body is swelling. I have a headache. My stomach hurts a bit, but I know “food is my friend” in terms of the acid steroids create. I crave spicey and salty. I know I will regret salsa and chips, but I don’t care. I force myself to do chores around my house, around the property. I need to move, but I don’t feel like it. 

I’m waning more as the evening comes. I don’t want to talk. I’m short tempered. Everything begins to bother me. Things that were in invigorating and inspiring yesterday, are annoying today. Everyone and everything becomes annoying. I annoy myself. I question everything now. My positivity turns into negativity. I control myself physically and psychologically so I don’t become the monster I feel brewing inside of me. I bite my tongue. Optimism Julie, optimism! 


Thursday brings exhaustion, extreme fatigue. Sleep is restless, yet I’m desperate for sleep. I sleep wake up, sleep wake up, sleep wake up. I finally get up. Yuk, I feel gross. Nauseated, dehydrated, achy, headachy, swollen, grumpy, pissy, short tempered, negative, sad, depressed, frustrated, why me, how come, what happened. Nothing tastes good. Metal mouth. I force myself to eat and drink. Ugh, I hate my life. What’s the purpose I wonder? There’s no end to this endless treatment road. Why, what’s the point. Negative thoughts dominate my thinking. I stuff it. I counsel the counselor. I’m grumpy, achy, nauseated, bloated, frustrated, sad, angry, pissed off. Exhausted. Want to do so much and can’t. Illness controls me. Medications and side effects control me. Everything controls my life but me. Everything’s upside down. Not supposed to be this way. My stomach hurts, my legs hurt, my back hurts, my ribs hurt, my head hurts. Everything hurts inside and out. 

I fake everything. I try to be ok. I try to be pleasant to those around me. I stuff it. I fake it. I suppress it. I hate you myeloma and what you have done to me. I am a stranger in my own body. Not fair. Not fair. Not fair. What did I do to deserve this? 

So tired. So exhausted. Need sleep. Can’t sleep. Then I do sleep. 

It’s Friday now. I not a happy camper. I’m exhausted, sad, frustrated, angry, bewildered, achy, yucky, nauseated. I don’t like my life. I don’t like that I don’t like my life. I’m Julie the Optimist, glass always half full. What happened? I fake being ok. I don’t want to burden those around me. I always pull it together. But I’m also honest if someone asks. I also let everyone around know they’re close to getting punched if they push my buttons. I’ve never punched anyone and I never would! It just sounds good to say. I always say it with a smile. 


My family tries to cheer me up. We talk about all the things I want to do on GOOD DAYS. Ha! I don’t really have many of those any more. Myeloma stole those. Treatments stole my break week. Fatigue stole my life. I resign myself to feeling lousy 5 days a week. That’s my reality.
It’s like being engulfed in a strangling sense of undefinable gloom and doom, pain, anxiousness, physical malaise, and days of having little control over my body and how I feel. I muse how it’s so crazy how the body can go from exhilaration to funk in just a matter of hours. I give in, I know I don’t have a choice. I’m spiraling down Alice’s rabbit hole. 

Scott trying to cheer me up with a silly selfie
I’ve planned and canceled multiple things. I thought about doing so many things on my many mental lists. Too fatigued, too tired, too grumpy, too overall yucky. I apologize to everyone for everything. I apologize to friends that want to see me, but I can’t. I apologize to everyone I have to cancel on. I drag myself outside to help Jim with the animal chores. I love my animals, but chores feel like an overwhelming chore now. But seeing all my animals and knowing how they need us, lifts my spirits.
I constantly, continually tell myself how fortunate, blessed, lucky, I am. Things could be so much worse… I am always reprimanding myself for any negativity I feel, as I have so much to be grateful for. Shut your trap Julie. Suck it up Julie. You’re here. Many are not. You’ve got so many things in your favor. Be grateful. You are one of the Lucky Ones… shut up Julie, shut up stupid steroids turning me into a negative, angry, frustrated witch.


The rooster crows, the hens cackle, the horses nicker, the birdies chirp, the kitties meow, the doggies beg for petting and love. All these faces need me. They help ground me in reality. My family worries about me and feel helpless that they can’t make it all better… I am frustrated with everything and everyone. I feel so powerless. I am a yucky feeling, dysfunctional blob. My head hurts, my mind is sad, my body is achy, I feel worthless, useless and wonder why about everything. I reprimand myself. Get a grip Julie. It’s day 4 of 40mg of steroids. Haven’t done this dose since 2010, I remind myself. Shut up Julie. Back then, you did 40mg DAILY, for 4 days on, 4 days off. Just shut up Julie and be grateful for myeloma numbers half now, what they were at diagnosis 12.30.2009

Saturday… late afternoon… slowly, all of a sudden, the fog begins lifting. Slowly, then suddenly I feel a bit better. My skin isn’t crawling, my stomach doesn’t hurt as much, the acid reflux has disappeared, as is my headache. Slowly the swelling and bloated feeling is lessening. Exhaustion and extreme fatigue is lessening. The sun is shining again. Positivity is coming back. I feel hope. I feel a bit more like me. I like my life again. 


Welcome to my 40mg of Dexamethasone steroids weekly now. To infinity and beyond. Whether it’s 20mg + 20mg 2x per week on Kyprolis infusion days, 3 weeks per month, or pounding 40mg at one swallow, I do what I have to do, to not let myeloma win. 



PS- I'll find out my lab results tomorrow, 10.17.16
Let's see how this new regimen of 40mg Dex is pummeling myeloma! Check back, and I'll update my numbers here after my Dr appt and chemo infusion... and of course, cheers to roids all over again Monday and Tuesday to infinity.

UPDATE: 10.18.16
Good News- (well somewhat):
IgA down from 2110 to 2050! Only 60 points, but I'll take the downward direction!
M Protein down from 2.19 to 1.96! Only .23, but I'll take the downward direction!  
These are still pretty high numbers...
IgA is 5x the high end of normal range of 70-400 
M Protein normal/remission range is zero 
 

Thank you for reading, caring, commenting :)) xoxo


Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can! 

2 comments:

  1. Thanks for the description of a week on dex. Yes, it is accurate. Dex at 40 mg per week is quite the merry go round for MMers. Perhaps Daratumumab is in your future. Medrol is the steroid for that treatment and the dosage is half of the dex you currently use. In fact, as treatments proceed the steroid is reduced to the equivalent of just 12 mg of dex. My experience with Medrol is that it is easier to metabolize than dex and the crash from the lower dose is more tolerable. I hope you continue to reduce those numbers

    ReplyDelete
    Replies
    1. Hi John, Thank you so much for your comment on my blog :)) I've followed you for a long time, and have had your blog linked on mine. Love your writing! All parts of your blog! (Wasn't sure which section was best to leave a comment on your blog, so I hope you see this here and on yours.) So glad you are recovered from your bout with pneumonia (physically and mentally), as I cannot imagine how scary that was! I tend to err on the side of bubblizing myself too much re travel, as I fear all the "cooties" out to get us. I've never had pneumonia, but know way too many of us MM-ers who have. Sadly the "average" well person does not understand how compromised our immune systems are from MM and our treatments, and so many just don't realize how "common germs" can do us in :((
      Our MM stats are similar for this Oct, so I hope your treatments go well and bring your #s down. I am IgA, and altho I don't "enjoy" being on the higher dose Dex (40mg weekly now), it did wonders for me with Rev, back in 2010 as prep for my SCT. I have a love/hate relationship with Dex, like all of us, but thankful it gets in there gobbles up the evil MM. Stay well, be careful of all the Fall and Winter cooties out there, and thank you so much for your comment on my blog :)) Again, love your writings, musings, updates, and pictures! Julie

      Delete

My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!


What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)

Infections

Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.